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Poster: William Tell Date: Sep 30, 2012 12:09pm
Forum: GratefulDead Subject: Re: Frank Zappa

How'd I miss this? As a rare example of "early detection worked", I'd like to make clear that I, like Frank, would've died in 2-4 yrs post detection if not for removal. Many was the exceptional, aggressive, about to invade the bladder form, that until removed only looked half that bad (and at 48 yrs, it was WAY early). Frank died v quickly because he did NOTHING about it, and clearly should have.

The bottom line of all these studies, and trust I've read them all, is that addt'l info is never bad, BUT what you do with it should NOT be by a simplistic set of rules (always case by case).

Most guys can live with it for extended periods, and there are FAR too many removals/various treatments that are unnecessary and/or premature, BUT for the small number of folks like myself that are clearly "saved", it would be shame to throw the test out with the knee jerk treatment response (not that you were saying that).

Get yours checked, and simply keep track; rapid doubling of PSA, and off you go to a GOOD urologist, and take it SLOW.

BTW, the best predictor of "performance" post removal is presurgery performance....whewww. Just watch out for "robotic" approaches.

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Poster: elbow1126 Date: Sep 30, 2012 12:25pm
Forum: GratefulDead Subject: Re: Frank Zappa

I was waiting for you to show up!

Sounds like yours wasn't really early detection as much as catching something already there in the screen. i.e you had something that had to be treated. I think the issue is not folks like you, it is the ones that are true early detection and it is not clear that they need to be treated.

Yes I agree that the primary problem is with what is done with the data not the data itself. I also think what is done with the data is often driven by the wrong motivation $$$

I think the answer is that we need better prognostic tools to know how best to move forward from an early detection screen. I think the studies are basically telling us that PSA is too blunt an instrument for this.

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Poster: William Tell Date: Sep 30, 2012 2:07pm
Forum: GratefulDead Subject: Re: Frank Zappa

Au contraire slack bladder--ie, "me": amazing, but true, I was monitoring VERY closely cause old man had it...all through my 30s and 40s, and then in ONE yr my PSA went from 2 to 4 after being 2 for 15 yrs, each and every yr. Bam, six months later I am recovering after doing all possible tests but then having it out and finding it was much bigger than it "shud" have been, etc. etc.

Thus, I think PSA is good cause it's v cheap, ya know? Then you can do many more things depending on other info.

And, though you are right to say "yours wasn't 'early' in typical sense" it was as fast as it could have been, and mine just happened to suddenly start growing v rapidly (that's something guys like you are/shud be studying, eh? variation like mine and Frank's--assuming he had an aggr form, blah, blah, balh).

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Poster: elbow1126 Date: Sep 30, 2012 8:20pm
Forum: GratefulDead Subject: Re: Frank Zappa

Ahh, see you should have been screened because you had a family history. Those are the people who clearly benefit, especially in breast cancer. I think the recommendations about screening are based on the general population not high risk people.

I think you made a pretty convincing argument for why PSA is problematic. Most are concerned about the false positives resulting in un-needed anxiety and care. Sounds like you had something closer to a false negative. That's even scarier.

PSA is cheap on an individual test level however it is not cheap if it results in un-needed treatment in a large population.

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Poster: William Tell Date: Oct 1, 2012 6:59am
Forum: GratefulDead Subject: Re: Frank Zappa

yes, I understand the cost biz, and we are probably just discussing the finer variations of "both sides" of the issue...mislead you a bit though, as the "old man had it" only in the sense that when he died of other causes, his had been enlarged enough (no biopsy) that he assumed he had it, etc., etc., but being 78, was probably just "normal"...however, that was 20 yrs ago, so I assumed "family history" and yet, probably just "normal" family history?

my pt was I personally monitored since I was/am paranoid...

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Poster: elbow1126 Date: Oct 1, 2012 7:38am
Forum: GratefulDead Subject: Re: Frank Zappa

like i said earlier, if a man lives long enough he will either die of prostate cancer or die with it.

Well I, for one, am glad you were paranoid!. Of course we always suspected such behavior after the time the lights went out here and you were running around with your shirt off, covered in body paint, using a tie as a headband while carrying a torch and screaming something about finding the discs that 6-14-68 were stored on before they fall into the hands of latter era fans.

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Poster: William Tell Date: Oct 1, 2012 1:07pm
Forum: GratefulDead Subject: Re: Frank Zappa

Ha! Those were the days...

I guess my perspective on the test cost biz is that given almost EVERY 40 yr old male does all the other blood work (cholest, etc) these days, this is relatively cheap "add on"...thus, the big exp in England with Rob and Co, IMHO, is overblown, in terms of the actual cost comparison given what we already do here...we could eliminate some of those, frankly, as the point is a few cases like mine and Frank are actual "saved lives" (ie, even if it's rare it's very significant) whereas the others (ie, cholesteraol) are just "quality of life/possible heart disease", etc., etc.